title: End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey.
abstract: BACKGROUND
  The prognosis for glioma remains dismal, and little is known about the final disease phase. To obtain information about this period, we surveyed caregivers of patients who were registered in the German Glioma Network and who died from the disease.
  
  
  METHODS
  A questionnaire with 15 items, focusing on medical, logistic, and mental health support and symptom control during the final 4 weeks, was sent to caregivers. For some of the questions, a scale from 1 (inadequate) to 10 (excellent) was used.
  
  
  RESULTS
  Of 1655 questionnaires, 605 were returned (36.6%) and evaluated. We found that 67.9% of the patients were taken care of at home for the last 4 weeks; 47.7% died at home, 22.6% died in hospitals, and 19.3% died in hospice facilities. Medical support was provided by general practitioners in 72.3% of cases, by physicians affiliated with a nursing home or hospice in 29.9%, and by general oncologists in 17%. Specialized neuro-oncologists were involved in 6%. The caregivers ranked the medical support with a mean of 7.2 (using a 10-point scale), nursing service with 8.1, and mental health support with 5.5. In 22.9% of cases, no support for the caregivers themselves was offered by medical institutions.
  
  
  CONCLUSIONS
  Although these data reflect the caregivers' subjective views, they are useful in understanding and improving current patterns of care. While patients and their caregivers are supported mainly by neuro-oncologists for most of the disease phase, the end-of-life phase is managed predominantly by general practitioners and specialists in palliative care. Close cooperation between these specialties is necessary to meet the specific needs of glioma patients.
authors.affiliation: Department of Neurological Surgery, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. oliver.heese@helios-kliniken.de
authors.forename: Oliver
authors.initials: O
authors.lastname: Heese
authors.forename: Eva
authors.initials: E
authors.lastname: Vogeler
authors.forename: Tobias
authors.initials: T
authors.lastname: Martens
authors.forename: Oliver
authors.initials: O
authors.lastname: Schnell
authors.forename: Jörg-Christian
authors.initials: JC
authors.lastname: Tonn
authors.forename: Matthias
authors.initials: M
authors.lastname: Simon
authors.forename: Johannes
authors.initials: J
authors.lastname: Schramm
authors.forename: Dietmar
authors.initials: D
authors.lastname: Krex
authors.forename: Gabriele
authors.initials: G
authors.lastname: Schackert
authors.forename: Thomas
authors.initials: T
authors.lastname: Reithmeier
authors.forename: Guido
authors.initials: G
authors.lastname: Nikkhah
authors.forename: Michael
authors.initials: M
authors.lastname: Sabel
authors.forename: Hans-Jakob
authors.initials: HJ
authors.lastname: Steiger
authors.forename: Uwe
authors.initials: U
authors.lastname: Schlegel
authors.forename: Markus
authors.initials: M
authors.lastname: Löffler
authors.forename: Michael
authors.initials: M
authors.lastname: Weller
authors.forename: Manfred
authors.initials: M
authors.lastname: Westphal
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000451:nursing / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D005858:Germany; D005910:Glioma / Q000451:nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D013727:Terminal Care; D055815:Young Adult
keywords: glioma; palliative care; supportive therapy